ALS Chronicle

This blog is here to chronicle the story of my wife's and my family's battle with ALS - Lou Gehrig's Disease. Symptoms, Diagnosis, Paths we have followed and experiences we have had will all be addressed.
You can contribute to curing this disease here: https://hopeforheidi.alscommunity.org

Monday, August 18, 2014

It is very hard to find the beginning of this blog unless you really do some digging.
I have seen some renewed interest in it since the ALS Ice Bucket Challenge hit, so here's a link back to the beginning. I hope it helps in some way.
http://alschronicle.blogspot.com/2009/01/why-of-this-blog-and-some-background.html

Monday, October 15, 2012

"Our limited perspective, our hopes and fears become our measure of life, and when circumstances don't fit our ideas, they become our difficulties."--Benjamin FranklinMy take: Life is what it is, don't expect it to measure up to your ideas of what it should be. Realize that you do what you can to make it better and that's all you can do. While easygoing is the goal, uptight is the result of measuring life by your own rules when Life, God or the Universe has it's own agenda for you and those around you.

Saturday, October 8, 2011

Thinking tonight...hard to sleep. On the eve of another Walk for ALS my mind is running through things that make it hard to relax and get some rest. Have not turned to write for a long time, but maybe this can quiet the mind.

To be dissapointed in someone is to be self-centered and judgemental.

There I said it.

When someone says "They let me down." Isn't it assuming that "they" needed to be or should be holding you up in the first place?

How can we be dissapointed in someone and be anything but selfish? Do we know what they are going through on a daily basis? Have we put ourselves in their shoes and considered that they might be going through things that are much bigger to them than your problems might be?

Some words have rung in my head pretty often over the past 20 or so years since he wrote them. I would say in hard times, when I am feeling let down or dissapointed, these words run through my head only second to the words of the Lord's Prayer, so Mr. Henley, you are in pretty good company, my friend.

"There are people in your life who've come and gone. They let you down, you know they hurt your pride. You better put it all behind you baby, because LIFE goes on. You keep carrying that anger, it will eat you up inside.....baby."

And then this...

"I've been trying to get down to the heart of the matter, because everything changes and your friends seem to scatter, but I think it's about....forgiveness, ....forgiveness,Even if, EVEN if, you don't love me anymore."

in a different stanza, this..."I've been trying to get down to the heart of the matter, because the FLESH will get weak, and the ashes will scatter, but I think it's about, forgiveness....forgiveness. EVEN if. EVEN if, you don't love me anymore."

Powerful words, I think.

Many of us know that the ashes will scatter.

At my 40th birthday party, many of my good friends were present. I was asked to say a few words, so some thoughts that were running through my head at the time came out. Given the stage, the occasion and the company I shared, I wanted to offer something more than a trite thank you. I wanted to make my friends think. I challenged anyone to tell me one thing, anything, that was more important that Love. I gave examples of things that some might consider, Friendship, Power, Money, even Food and Water.

Friendship: What is friendship without love? Nothing. It is not true and it can't exist.Power: What really is power? The ability to exert force? What force is more powerful than Love?Money: What good is money without love? Worthless and wasted on shallow pursuits.Food and water: What good is food and water without love? Sustinence wasted on a husk.

My arguments were airtight (at least they were to me after a few glasses of really good wine.):-)

Well, one thing that might be more important than Love is forgiveness. I don't know. That is a tough one. Maybe you can never say that one is purely more important than the other. Maybe it is the time in your life, or the circumstance of the day that would make one more important than the other. Maybe they are equally powerful or maybe they go hand in hand. One never being far from the other or even not being able to exist without the other.

Ah, pondering heavy things at 3am. let it go...now. Time to sleep. Let it go, let it be. FORGIVE.Good night.

Wednesday, September 22, 2010

The angels were already here. I could not see them, but Heidi could. She was holding on by a thread, but holding on gracefully. Her sister, Heather was on her way with baby Lucy, and she wanted to see her. Lucidity was fleeting as the narcosis had set in a few days prior due to the shallowness of her exhale. When nerves don't fire, muscles don't know what to do.

One year ago today, I lost my beautiful wife to ALS. She was amazing and strong. She loved her girls, her family, her friends and she loved me. I loved her then and for the 18 years prior. I love her still and miss her greatly. Not every moment of every day, but in the quiet times and on days like today when the fugue of time and pain is washed away by stark memories, bringing back my own fleeting lucidity about these events.

On this day last year, she could not move. Her voice was a whisper and she mostly slept. There were times when she would awaken, look past me at something only she could see. She would nod her head towards a part of the bed where no one was, and look at me as if to say, "cant you see them?" Once she said "See the baby?" I don't remember my exact words, but I said something like "No, but I believe you." And I did.

Whomever they were, whatever spirits, they were there to take her with them on that cool night this time last year. She was not afraid of them, she was not afraid to go. She was only worried about me and her girls. She was not worried about herself. This was her character, benevolent and selfless.

Heather came with Lucy sometime in the late evening. They visited with her. Heidi recognized Heather and whispered her love to her. She smiled at Lucy and watched the kids play monster games on the floor of our bedroom. Family said good night and unwittingly good bye, as her time was now measured in just hours. We did not know she would pass that night, but all of us knew the time was nearing that she would go.

In the quiet of the night, I spoke with her. I told her everything would be alright. As she lay in my arms, her breathing became shallower and shallower, almost just a sipping of air. At some point, I realized that this was going to be our last night together. I held her in my arms and my last words to her were, "Don't worry, baby, we are going to be OK. It is ok for you to go now, I love you." And she did. Within moments of me saying that, she was not breathing anymore. I kept talking with her telling her things that I knew would comfort her if she could hear them. How she had been strong, how she was so loved, how she had done everything she could to prepare all of us for life without her.

I don't know how long I lay there with her in the silence. It seemed like forever, but perception of time has a way of eluding you in moments like this. I went to tell the family she was gone. We all came together and prayed over her.

After a while, I carried her downstairs one last time and laid her on the couch, wrapped in the bed linens with only her face exposed. As the color and warmth left her, the family gathered around and read stories about butterflies and how they transform. We decided to take the girls to my mom's house and all sleep together there, and not to stay for when they came to take her away from the house. My last vision of her was a close kiss. I closed my eyes as I pulled away, knowing that vision was the last I would have of her as she lay there in peace. Her torment was done, her spirit was free to dance, and to swirl and sing silly songs off key and to wear high heels, making her taller than most men in the room.

In June earlier that year, as family came to watch over her, her sister Crystal brought her 3 month old baby with her to visit. If you knew Heidi, you knew that she loved babies. She held little Parker in her weak arms, with a huge beaming smile on her face. She looked at me and said "Bill, would you want another baby if I could give you one?" And though we had decided mutually several years prior that we were "done", I said, "Yes, baby. If you could give me one, I would."

Love works in mysterious ways. No one knows the power of it and where it begins or what it can do. All I know is that a year later, I have an amazing newborn son. A blessing that I never thought I would have. I have found new love and created a new family. These are things that Heidi would have wanted for all of us. It has not been easy, as merging families never is. Easy no. Worth it, YES.

I have been much less active in the ALS community for some time. It has been hard to engage for many reasons. Not the least of which is the aforementioned merging. On this anniversary day, I am re-engaging. ALS is a disease that needs a cure. There is promise in some drugs now, and there is always HOPE that someday, no family will have to suffer this type of loss.

Our ALS walk is coming up. If you would like to participate in person on our team the "ALS Angels" please let me know. If you would like to donate, you can do so here. If nothing else, say a prayer for all of those suffering from and with this disease. Thank you all so very much.

Wednesday, January 20, 2010

I have obviously decided to "privatize" my life recently. For me, most of the journey I feel like I can help with has been already documented. If you have read this blog, you know how I feel about many things. I have put my heart out there for pretty much anyone to see and left it exposed for a long time. I am not pulling any of it back, but I am deciding that it is time to re-focus my energy on the life that is in front of me and my family. If you have read my blog from back to front, then God bless you. You have seen my pain, my passion and many things that I never thought I would ever share with the world. If you read it all, you have probably felt a portion of my pain, and I have to apologize for that because it is the last thing I ever want to cause anyone.

So, this is what I feel the messages of this blog are...at least today...

1) Live your life. You never know when your existence on this planet will change forever. If you are blessed with health then for God's sake, don't waste it worrying about small issues or petty problems.

2) Love without fear. Love is a blessing. It is something that you can't buy, borrow or sell. If it comes your way, you have to accept it and do everything in your humanly power to protect and enjoy it. If you fear losing it, you will kill it. If you don't love with freedom in your heart, you will only jail yourself. If love goes away, then it wasn't love and you can't have lost it because you never had it in the first place. So what is there to fear, really?

3) Love changes. Don't expect what you feel to be the same always. Just try to feel the truth of it. Whatever it is in your heart is what it IS. Don't judge Love, just feel it. Give it back. It will take care of you and itself.

4) Be strong. It is simple to say, much harder to do. Nothing you do for yourself will ever be worth a fragment of what you do for someone else. Step up. Give. Don't Give up.

5) You are amazing. The compassion I have felt from friends, family and even complete strangers has left me speechless and humbled on so many occasions I can't even begin to describe or document them here. I remain in the debt of so many people that if I tried to even begin to repay it, I would be overwhelmed in seconds. I know you don't expect it, and all I can do is try to repay the grace that I have felt back into the universe in some small way. The messages contained within this blog are a small token of my gratitude and humility. Love flows out to you, whoever you are, from me every day.

6) ALS Sucks. It sucks worse than any disease I have ever heard of. A diagnosis of ALS is currently a death sentence. There is no treatment, there is no cure. If you have read this blog, you know what it does to those affected by it. You know what it does to their friends and families. I won't belabor those points here. I will say that we can't quit looking for a cure. The fact that so few people have it compared to other diseases is no excuse. There are no survivors of the disease to advocate for it only devastated people left trying to move on with their lives. Genetic/Familial ALS only results in about 10% of cases, so the direct threat to people related to those with ALS is even somewhat remote (by comparison.) It is not a pretty scenario. I have had to take a break, but I will not stop advocating and educating people about this horrible devastating disease that NO ONE should ever have to suffer. (Ironically, when I spellcheck my blog, ALS is not recognized as a word) :-(